Stephen Richert is a passionate man with unlimited energy and ideas. A documentary adventure photographer, he was diagnosed with Type 1 diabetes (T1D) in 1999 when he was 16 years old.
In 2012, I interviewed Richert for an article called “Extreme Athletes,” when he was in the middle of “Project365,” a quest to raise awareness and inspire people to live well with diabetes. When we spoke, he was traveling across the country, climbing every day for 365 days, into the “wildest, steepest, and most extreme terrain North America has to offer…to conquer the unconquerable; overcoming diabetes through the simple act of climbing…every day, for one year.” At the end of the year, while trying to figure out “what comes next,” Richert joined a team of T1D athletes from all over the world to climb Mount Kilimanjaro.
Since then, Richert has experienced moments of triumph, burnout, frustration, and renewed determination. The main source of his frustration is a gradual realization that “it’s impossible to do something (make change happen) without industry funding. The time and resources required are prohibitive,” he says.
After much trial and error, Richert was discouraged to discover that there are select voices in the diabetes community (#DOC) represented on a large scale, and those voices are speaking to a limited audience. “There’s no amount of good that I can do with my message of inspiration if it’s not reaching people who can’t afford insulin.” Some of these are people between the ages of 25 and 35 years old, young professionals who are struggling to find work or who are working several low-paying jobs and struggling to pay for health insurance.
Instead of walking away from the community of diabetes advocacy, however, Richert’s frustration inspired him to expand his view. He decided to look all the way back to the beginning, to Fredrick Banting, one of the men who transformed or saved our lives with the discovery of insulin. One of the men who chose to sell his patent for a dollar because according to Banting, “Insulin does not belong to me, it belongs to the world.”
Richert’s latest project is a documentary called Banting’s Ghost, which seeks to address access to affordable insulin. It was inspired by his desire to humanize the challenge and the impact of living with diabetes, and he says the story will be told through photographs, videos, blogs, and audio content. He cites the project Humans of New York as an inspiration. “My goal is to have a similar effect, a photodocumentary project, a series of videos that create a barrage of stories.”
Richert says that access to insulin is currently understood through graphs and numbers, but what inspires change, empathy, and compassion is people, not data. He’s not afraid of making people uncomfortable with his message because the reality of not being able to access insulin is uncomfortable and scary. And while he applauds the work of JDRF and ADA, he feels the focus and dollars should be spent on access to technology rather than the advancement of technology.
“We can never hope to correct the problem if we don’t look at the whole picture.”
To learn more about Stephen Richert and Banting’s Ghost, visit livingvertical.org.
Want to learn things you can do to make insulin more affordable? Read “The Price of Insulin,” by nurse David Spero.